PCORnet

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
®
PCORnet, the National Patient-Centered Clinical Research Network
Traditional health research hasn’t always focused on the questions and outcomes that
matter most to patients and those who care for them. The current clinical research system
is often slow, expensive, and does not make good use of the wealth of information available
from routine healthcare delivery.
To improve clinical research, PCORI is developing PCORnet, the National Patient-Centered Clinical Research Network.
PCORnet will harness the power of health information to do research faster, at lower cost, and with greater power than
previously possible. It is designed to help us address many important unanswered questions about healthcare options.
PCORnet will engage patients, clinicians, and health systems in collaborative partnerships to support robust research
using large volumes of information from electronic health records, claims databases, and other sources, including data
from patients themselves. Patients are also involved in developing the rules under which PCORnet operates, including
safeguards for data privacy and security.
PCORI has invested more than $100 million to develop the key components of PCORnet:
• 11 Clinical Data Research Networks (CDRNs), which are health system-based networks that securely collect
health information during the routine course of patient care
• 18 Patient-Powered Research Networks (PPRNs), which bring together patients and communities to discover,
propose, and answer relevant research questions and become engaged in the whole research process
• A Coordinating Center, which provides technical and logistical support to the data networks and assists in
program evaluation
STRUCTURE OF PCORnet
Governance
Data Privacy
®
PCORnet
Steering Committee
COORDINATING CENTER
• Each Clinical Data Research
Network (CDRN)
• Each Patient-Powered
Research Network (PPRN)
• Patients
• HHS Agencies (NIH, FDA, AHRQ,
CDC, CMS, ONC, ASPE)
• Medical Product and Device
Manufacturers
• PCORI and Coordinating
Center
Also includes members of
PCORnet Executive Committee
Project
Mgmt.
Office
CDRNs
Ethics &
Regulatory
Data Standards &
Security
Health System
Interactions
Patient & Consumer
Engagement
Patient-Generated
Outcomes
Clinical Trials
Rare Diseases
Biorepositories
PPRNs
Obesity
pcori.org • info@pcori.org • Follow us @pcori
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
®
PCORI approved $93.5 million in awards to 29 individual data networks that together will form PCORnet.
11 Clinical Data Research Networks | $76.7 million in funding
Network
Lead Organization
Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN)
The Chicago Community Trust
National Pediatric Learning Health System (PEDSnet)
The Childrens’ Hospital of Philadelphia
Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)
Harvard University Medical School
Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance
Learning (PORTAL) Network
Kaiser Foundation Research Institute
Louisiana Clinical Data Research Network (LACDRN)
Louisiana Public Health Institute
Accelerating Data Value Across a National Community Health Center Network
(ADVANCE)
Oregon Community Health Information Network
Patient-Oriented Scalable National Network for Effectiveness Research (pSCANNER) University of California San Diego
Greater Plains Collaborative
University of Kansas Medical Center
PaTH: Towards a Learning Health System in the Mid-Atlantic Region
University of Pittsburgh at Pittsburgh
Mid-South CDRN
Vanderbilt University Medical Center
New York City Clinical Data Research Network (NYC-CDRN)
Weill Medical College of Cornell University
18 Patient-Powered Research Networks | $16.8 million in funding
Network
Lead Organization
Multiple Sclerosis Patient-Powered Research Network
Accelerated Cure Project for Multiple Sclerosis
ALD Connect
ALD Connect, Inc.
Sleep Apnea-Patient Centered Outcomes Network (SAPCON)
American Sleep Apnea Association
NephCure Kidney Network for Patients with Nephrotic Syndrome
Arbor Research Collaborative for Health
ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and
Ulcerative Colitis
Cincinnati Children’s Hospital Medical Center
The COPD Patient-Powered Research Network
COPD Foundation, Inc.
The CCFA Partners Patient-Powered Research Network
Crohn’s and Colitis Foundation of America, Inc.
The Patients, Advocates and Rheumatology Teams Network for Research and
Service (PARTNERS) Consortium
Duke University
Rare Epilepsy Network (REN)
Epilepsy Foundation
Community-Engaged Network for All (CENA)
Genetic Alliance, Inc.
Arthritis Patient Partnership with Comparative Effectiveness Researchers (ARPoWER)
Global Healthy Living Foundation
PI Patient Research Connection: PI-CONNECT
Immune Deficiency Foundation
Mood Patient-Powered Research Network
Massachusetts General Hospital (The General Hospital
Corp.)
DuchenneConnect Patient-Report Registry Infrastructure Project
Parent Project Muscular Dystrophy
Phelan-McDermid Syndrome Data Network
Phelan-McDermid Syndrome Foundation
The Vasculitis Patient-Powered Research Network
The Trustees of the University of Pennsylvania
Health eHeart Alliance
University of California San Francisco
American BRCA Outcomes and Utilization of Testing Patient-Powered Research
Network (ABOUT Network)
University of South Florida
The Patient-Centered Outcomes Research Institute (PCORI) is an independent organization created to help people make better-informed healthcare decisions.
pcori.org • info@pcori.org • Follow us @pcori